One of the difficult aspects of this, and many diseases, is the feeling of powerlessness. What can I do to improve my situation, short of following doctor's orders? The western medical approach is: not much, try some exercise and eat balanced meals. I find myself searching for more avenues that might aid me in my body's efforts to heal. More on that later. First, the status report: IGGs back up to 4020 and M spike at 3.3. Given all the bouncing around, this is considered stable. White count is at 2.0, after getting neupogyn a week ago, and hematocrit is 23.5, hemoglobin 8.2. Those last 2 numbers require another transfusion--2 weeks after the last transfusion, which I'm headed for in about 30 minutes. So, Rifkin says my bone marrow seems stuck and we'll need to take a look at the bone marrow--bone marrow biopsy next Monday. This stuck bone marrow is of most concern as any significant treatment will likely require some level of functioning by my bone marrow in order to allow me some ability to recover from the treatments.
I started some acupuncture about 3 weeks ago to try to get some relief for my peripheral neuropathies in my feet--shooting pains and numbness. Not much success on that front. I saw a Chinese herbalist this morning for my thrush. He seems to have the greatest knowledge of where my imbalances lie and what I can do diet wise to try to restore balance. I had a very interesting discussion with him about my body's energy, the imbalances that are making it difficult for the bone marrow to recover and what can be done about it. This is also at the core of the thrush or coating on my tongue. As he said, it is but a symptom of the imbalance in the body. Now, I have been taking some concentrated vegetable soup from a Dr. in the UK, upon recommendation of a close friend who has had some success with this guy's product. He requires, as part of his regime, that I abstain from eating any meat or fish.
The Chinese doctor, on the other hand, counseled against a strict vegetarian diet because of my low red cell count. He said the best source of nutrients to aid in the production of red cells is red meat. Makes sense right? He provided a number of dietary recommendations along with some herbal tea to address the imbalances. He also counseled against acupuncture at this time because of my low white cell count--don't want to risk an infection. I had actually been reading about that risk, along with some other literature that said acupuncture may not be beneficial if you have a low white count. Rifkin knows of my trying acupuncture but had no opinions. Trying to exercise some control requires the balancing of conflicting opinions. And maybe it is all for naught. But I have to feel like I am trying to help myself so I proceed and try to do what makes most sense. Could it be that no one knows? It often seems that east and west will never meet and they go their very separate and disparate ways in efforts to treat disease. And the patient is caught in the middle.
And with that I will close. I am always thankful for everyone's support and continue to see this as a journey, no matter how difficult it may seem at any one point.
With much love and continued hope,
Dan
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5 comments:
Dan,
I read your blog often and today you seem somewhat blue. I think it is incredable that you can ride your bike 8-10 miles!! Horray for you! Monday will tell you more. One day at a time Dan. One day at a time. You are very brave.
Hugs and prayers,
Shawn
I also struggle with low hemoglobin. My docs want me eating red meat...and now that my kidneys are healing my hemoglobin has been coming back on it own. I am always cautious about diet recommendations. I would never promote my example for others, but I took no vitamins or any other 'natural boosters' during my chemo and auto transplant. I did eat red meat, chocolate chip cookies and a can of diet coke and diet mt dew everyday, plus a lot of fruit and veggies. As I said, don't think you want to follow my plan, but I did achieve stringent complete response and my hemoglobin has made it over 12 on its own for the first time in several years. I happen to like that diet, and keeping me happy keeps me less stressed and I think that is good for fighting this crappy cancer. Your battle, will be mine on down the road, so I cheer you on hoping for good things for the both of us. Thanks for sharing your thoughts
Dan,
yes, try whatever feels right to you.
If you're in the mood for red meat, go for it, if not, don't.
YOU are your best doc, you know yourself best.
Want sugar candy ? Go for it.
Want salty nuts, go for it.
Listen to all advises and then mix your own cocktail out of it.
Love,
Ingrid
Dear Dan,
One of my friends' first question upon our return to Paris was: 'How is Dan?' You have a big following here -- we are all rooting for you!
We will be thinking of you on Monday. Bises, Sigun.
Dan -- I follow your blog periodically and I say a prayer of intention daily for all the MM fighters out there as I have relative doing battle with it, too. Have you looked into ionized water as a support to everything else you are doing? I have limited personal experience with it, and would not ever claim benefits without personal results, but wondered if you had heard about it?
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